Hear My Voice: Moving Beyond Awareness

AnnbyKorn1Ann Silberman wants readers to think critically and fund research to help people with metastatic breast cancer reach their goals and milestones.

 

It seemed slightly odd to be asked to write for a website called “Living Beyond Breast Cancer” when, as a woman with metastatic breast cancer, it is only my family who will live beyond cancer. I will merely live with breast cancer until it kills me.  But so much of Pink October has so little to do with those of us who are metastatic that I agreed that our metastatic voices need to be heard this month.

In 2009, I was diagnosed with Stage IIA HER2-positive breast cancer. I did the normal treatment for my diagnosis; mastectomy first, then “TCH” which is 6 rounds of Taxotere and Carboplatin and a year of Herceptin. I cried the night before I lost my breast, I smiled as the nurses handed me my chemo graduation certificate, and my last Herceptin treatment brought great relief. My year of endurance had ended and now I could get fully back to my life.

At my very first 3 month post-treatment appointment, my doctor sent me for a scan, which brought the devastating news: breast cancer had spread to my liver. My cancer is now incurable.

And so I did as we all do – I searched for survival statistics, read stories of struggle and death, and learned acceptance.  I figured out how to live with a terminal illness (and was not always graceful about it).  Finally, I set a goal: I would see my son graduate from high school.

Over the course of the next three years, I was sicker than I ever thought anybody could be, but my doctor did not give up on me, and I did not give up on trying for my son. I had half my liver removed in an effort to eradicate the liver mets, only to find they grew right back. I nearly died from c-diff sepsis that landed me in the ICU and then left me recovering at home, weak and sick, for months. I struggled through 7 different chemotherapy drugs, each with their own side effects, until my marrow would no longer recover and my immune system was gone. I did SBRT radiation on the mets that continued to mutate. And, finally, I was put on Perjeta, which I call my miracle. My mets disappeared into the ether and in May of 2014, I not only watched my Valedictorian son walk with his high school class, but also this September I took him to his college, Caltech, settled him in, and even made his dorm room bed. Despite the odds, I reached my goal.

I do not ascribe my continued survival to anything but luck.  Many hundreds of thousands of women with metastatic breast cancer have loved their families. They all set the goal of seeing an important milestone, and if they didn’t get there, it was not because of any lack of strength or will. They were no less positive than me, no less strong than me, and they didn’t want it less than me. They died and I haven’t for one simple reason – the drug that would have saved them has not been invented.

I was the first person in my oncology office to get Perjeta – my nurses had to learn to infuse it for me. It had only been approved by the FDA for metastatic cancer 2 months before I received it. And, it has been my miracle – for how long, we don’t yet know. What we do know is there are other miracles out there, new drugs for different types of breast cancers or vaccines or new treatments, all being tested by scientists who are in desperate need of money to complete studies, drugs that will bring the same relief to your sister, your mother, or your child that I have been lucky enough to receive.

This Pink October, please pay attention to where your money goes. The only women who die of breast cancer are those who have metastatic cancer. And, 96 percent of those who have metastatic cancer now were detected at an early stage, like I was. The idea that “awareness” and “early detection” will stop breast cancer from metastasizing is not true. Statistics bear this out, as does my own personal story, but marketing professionals want you to believe otherwise so they can sell you pink products. Just know: the numbers of women who die each year from breast cancer have not changed since the pink ribbon first unfurled.

This October, think critically. Please only support charities that give all their money to research. Avoid pink, which now harms the cause rather than helping it. Awareness has been achieved: even schoolchildren understand breast cancer. Keep in mind, cancer of any stage metastasizes, sometimes years after diagnosis, and nobody knows why. It is time to change the focus from finding cancer to researching better treatments for those who already have it.

There are more than 150,000 women out there today with metastatic breast cancer. Each of them is trying to reach a goal: whether it is to see a child’s 10th birthday, high school graduation, or a first grandchild. Please help them. Help us all. Don’t buy pink. Fund research.

 

Ann Silberman is a metastatic cancer patient who blogs at http://www.butdoctorihatepink.com. She is married and has two sons, two stepdaughters and a brand new grandchild. She is very grateful to her doctor and nurses for a high level of care and for her family and friends who have stood beside her.

Visit lbbc.org/hearmyvoice to read the other posts in our series.

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